The Spina Bifida Association (SBA) is the only national voluntary health agency working for people with Spina Bifida and their families through research, education, advocacy, and service. SBA seeks to expand its own research goals and further the Agency for Healthcare Research and Quality (AHRQ)'s mission to improve the quality, safety, efficiency, and effectiveness of health care for all Americans by convening the First World Congress on Spina Bifida Research and Care, a premier forum for national and international specialists, to take place March 15-18, 2009. In hosting this meeting, SBA is creating a forum for professionals interested in research and improving care related to Spina Bifida that does not exist elsewhere. With the theme, "The Future is Now," the First World Congress on Spina Bifida Research and Care will serve as a forum for developing and examining basic and clinical research on Spina Bifida. The issues and challenges in availability and quality of health care for those living with Spina Bifida will be examined through a multidisciplinary perspective, including that of specialists in neurosurgery, urology, orthopedics, nutrition, genetics, epidemiology, psychiatry, nursing, and social work. The goal of this meeting is to provide a multidisciplinary forum to present new basic science and clinical research including health care delivery research, novel treatments, or pilot projects. Secondary goals are to engage researchers in Spina Bifida in developing a research strategy for further study of these issues and challenges, based on information resulting from this meeting. The First World Congress on Spina Bifida Research and Care will be a research development conference focused on discussing the future of care for this challenging and complex birth defect. The First World Congress on Spina Bifida Research and Care builds on SBA's quality improvement efforts, including development of a research agenda, a national clinic program survey, development of a patient registry, development of an electronic medical record, and a classification system for clinics. SBA has partnered with the Agency for Healthcare Research and Quality, as well as the Centers for Disease Control and Prevention and the National Institutes of Health, for these efforts.